The experiences of adult heart, lung, and heart-lung transplantation recipients: A systematic review of qualitative research evidence.

AIM: To review evidence about the experience of being the recipient of a donated heart, lungs, or heart and lungs. DESIGN: A systematic review (registered with PROSPERO: CRD42017067218), in accordance with PRISMA guidelines. DATA SOURCES: Seven databases and Google Scholar were searched in May 2017 and July 2019 for papers reporting English-language research that had used qualitative methods to investigate experiences of adult recipients. REVIEW METHODS: Quality was assessed and results were analysed thematically. RESULTS: 24 papers (reporting 20 studies) were eligible and included. Their results were organised into three chronological periods: pre-transplant (encompassing the themes of 'dynamic psychosocial impact', 'resources and support'), transplant ('The Call', 'intensive care unit'), and post-transplant ('dynamic psychosocial impact', 'management', 'rejection'). Sub-themes were also identified. It was evident that contemplating and accepting listing for transplantation entailed or amplified realisation of the precipitating illness's existential threat. The period surrounding transplantation surgery was marked by profound, often surreal, experiences. Thereafter, although life usually improved, it incorporated unforeseen challenges. The transplantation clinic remained important to the recipient. The meaning of the clinic and its staff could be both reassuring (providing care and support) and threatening (representing onerous medical requirements and potential organ rejection). CONCLUSION: This review has implications for the psychosocial care of transplant recipients and indicates the need for further research to gain insight into the experience of receiving a donated heart and/or lung. IMPACT: Medical consequences of heart and lung transplantation are well documented; this is the first systematic review of research using qualitative methods to investigate the experience of heart, lung, and heart-and-lung transplantation. The psychosocial impact of transplantation was found to be dynamic and complex, with notable features evident before, during, and after transplantation. Clinic staff remained significant to recipients. It is clear that recipients need continuing psychosocial as well as medical support.

The Transplant Evaluation Rating Scale (TERS): A Tool for the Psychosocial Evaluation of Lung Transplant Candidates.

OBJECTIVES: An evaluation of psychosocial functioning prior to lung transplantation is advisable for anticipating behavioral difficulties and for screening for any psychological distress that might be harmful to posttransplantation outcomes and adjustment. METHODS: In this cross-sectional, single-center study, the level of psychosocial functioning of N = 75 patients before lung transplantation was rated using the Transplant Evaluation Rating Scale (TERS). RESULTS: he reliability of the TERS total score was satisfactory at α = 0.75. A two-factorial solution (emotional sensitivity; defiance) was found. Higher TERS scores were significantly associated with higher depressive and anxiety symptoms (r = .38/r = .42), lower quality of life (r = -.26), and fewer years abstinent from smoking (r = -.35). No associations were found with lung disease and symptom severity. CONCLUSIONS: The TERS appears to be a reliable and valid measure with clinical utility for specifying behavioral concerns prior to lung transplantation.

Post-traumatic stress disorder (PTSD) in cardiology and oncology--which diagnostic tools should be used?

OBJECTIVES: PTSD prevalence rates in cardiac and cancer patients greatly vary probably due to diverging samples, designs and assessments. Aim of this study was therefore to compare prevalence rates of PTSD as well as instruments assessing PTSD in different cardiac and cancer patient groups. METHODS: A total of 274 cardiac and cancer patients were examined with the Post-Traumatic Stress Scale 10 (PTSS-10) and the Impact of Event Scale - revised (IES-R). Presence of PTSD was validated by Structured Clinical Interview for DSM-IV (SCID). RESULTS: Diagnostic criteria for the existence of PTSD were met by 29.2% of all patients via PTSS-10, by 7.6% in IES-R and by 4.8% in SCID, indicating substantial discrepancy among assessments. This is further underlined by the moderate correlation between self-reports and poor agreement with the standardised interview. CONCLUSION: A structured interview is the "gold standard" for diagnosing PTSD in cardiac and cancer patients. Questionnaires can be used as screening instruments when they reliably assess trauma-related diagnostic criteria. Further studies are necessary to clarify the specifics of trauma criteria in medical setting.

Cognitive and behavioral functioning of children listed for heart and/or lung transplantation.

The objective of the study was to assess cognitive function and behavior in a group of children listed for heart and/or lung transplantation. Ninety-nine children (3.7-16.8 years) listed for heart and/or lung transplant for congenital heart disease (CHD), cardiomyopathy (CM), cystic fibrosis (CF) or primary pulmonary hypertension (PPH) were evaluated with standardized measures of cognitive function, academic ability and behavior. Results were compared with a historical cohort of healthy children and comparisons were made between the four diagnostic subgroups. Mean subtest scores, overall IQ and achievement scores were within the normal range for the total group but were significantly lower than those of the healthy group. Although there were few significant differences between the diagnostic subgroups children with CHD or CF tended to perform at a lower level than those with CM or PPH. There were some significant issues with behavior for all diagnostic subgroups, particularly in the domain of social competence. Patients with end-stage heart or lung disease are at increased risk for cognitive and/or behavioral problems, particularly those with CHD. Follow-up of these patients after transplant is important to determine the role that psychological functioning prior to surgery has in the longer term after surgery.

Health-related quality of life in long-term survivors after heart and lung transplantation: a prospective cohort study.

BACKGROUND: Health-related quality of life (HRQoL) represents an important outcome measure to assess the success of transplantation in the long term. This study evaluated HRQoL in heart (HTx) and lung (LTx) transplant survivors, and assessed potential outcome-related predictors from before to 5 years after transplantation. METHODS: Study participants (n=170) were prospectively followed up from before to 5 years after HTx (n=82) or LTx (n=88), including HRQoL assessments (pretransplantation, 6, 12, and yearly between 24 and 60 months) using the Short Form-36, employment status index, and monitoring of adverse events. RESULTS: Patient groups (HTx vs. LTx) differed with respect to gender (men 74% vs. 48%; P<0.03) and high-urgency waiting status (72% vs. 45%; P<0.0001). Both cohorts showed the most significant HRQoL improvements within the first year posttransplant (P<0.0001), and relatively stable conditions afterward. Marital (P<0.01) and employment status (P<0.01) impacted HRQoL in both groups. The incidence of bronchiolitis obliterans showed significantly lower HRQoL in LTx patients (29.3%; P<0.005). CONCLUSIONS: HTx and LTx patients benefit from the transplant procedure with respect to HRQoL improvements for at least 5 years posttransplant; however, their trajectories during this time interval differ. Further research on organ-type-related predictors of HRQoL is necessary for the development of tailored psychosocial interventions.

Prospective psychological evaluation of pediatric heart and heart-lung recipients.

OBJECTIVE: To study psychological adjustment in children and adolescents before undergoing heart or heart-lung transplantation and to reevaluate them at 6, 12, and 24 months after surgery. METHODS: Previously validated measures of behavior and depression were administered to children, their parents, and teachers. Parents also completed a measure of distress. RESULTS: Before transplantation, participants and parents obtained significantly higher scores on measures of behavior and psychological distress than children with no health problems and their parents, but 1 year after transplant, there were no significant differences between the two groups. Over time, there were significant improvements in depression and behavior scores in the group who had undergone transplantation. CONCLUSION: Despite improvements in psychological functioning over time, a significant minority of children and adolescents undergoing transplantation are at risk for psychological adjustment difficulties. Psychological interventions to reduce morbidity need to be implemented and evaluated.

Adherence in adolescents and young adults following heart or heart-lung transplantation.

To assess the prevalence and some potential correlates of non-adherence to medications in adolescent and young adult transplant patients. Fifty patients who had undergone heart or heart-lung transplantation 1.4-14.9 yr (mean 8.8 yr) previously completed the Beliefs about Medication Questionnaire (BMQ), Perceived Illness Experience (PIE) scale and a demographics questionnaire. Medical notes were reviewed for information regarding previous psychiatric referral, rejection episodes and complications and noted concerns about adherence. Forty (80%) completed questionnaires were received. Non-adherence determined from the questionnaires was associated with forgetting to take medication and was classified as unintentional non-adherence. Such non-adherence was reported by 11 (28%) patients. Seven patients (18%) showed evidence from their records of deliberate non-adherence, which was classified as intentional. Whilst intentional non-adherence was associated with depression and transplant-related lymphoma, unintentional non-adherence and perceived difficulties with medications were associated with high scores on the PIE preoccupation with illness and BMQ concerns subscale and with drinking alcohol. Future research is required to determine whether unintentional non-adherence results in significant medical complications in the longer term and how a reduction in the prevalence of non-adherence can be facilitated.

Determinants of quality of life after lung transplant: an Italian collaborative study.

BACKGROUND: With the improvement in survival rates after lung transplantation, concern has arisen about evaluating quality of life (QoL). This multicenter cross-sectional study aimed at describing QoL and identifying factors associated with it. METHODS: We assessed QoL in 129 lung transplant recipients from 5 centres in Italy, during scheduled follow-up visits, using the SF-36, GHQ and St George's respiratory questionnaires (SGRQ). RESULTS: The SF-36 elicited impaired QoL in the physical, but not in the mental domains (PCS = 44; MCS = 53). The GHQ identified 29 patients (23%) with psychological discomfort and the SGRQ scores were significantly better than those of patients with chronic respiratory disease. On multivariate analysis, exertional dyspnea was an independent predictor of the PCS (adjusted delta -6.3 (p < 0.001), while osteoporosis (delta = -3.1), BOS (delta = -4.3), acute rejection (delta = -3.9) and heart and lung transplant (delta = +6.4) were only marginally associated. Dyspnea was also related to a GHQ score > 5. CONCLUSIONS: The study identified exertional dyspnea as the main determinant of QoL as measured both by SF36 (PCS) and GHQ. Other objective measures contributed only to the PCS. Thus, the SF-36 (PCS) and GHQ were useful in identifying patients who needed treatment not only for complications but also psychological support and continued physical rehabilitation.

Longitudinal assessment of psychological functioning in children after heart or heart-lung transplantation.

BACKGROUND: Despite the increasing numbers of pediatric heart and lung transplants being performed worldwide, longitudinal psychological evaluation of children and adolescents undergoing transplantation remains uncommon. The objective of this study was to assess psychological functioning in a group of patients at 12 months and 3 years after transplantation. METHODS: Thirty-four children and adolescents (mean age at 12-month assessment: 7.9 years [range 1.3 to 15.3 years]) were evaluated after heart (n = 24) or heart-lung (n = 10) transplantation for congenital heart disease (CHD; n = 10), cystic fibrosis (n = 1), cardiomyopathy (CM; n = 21) or primary pulmonary hypertension (n = 2). Standardized measures were used to assess development, cognitive function, mood state and behavior at each test occasion. RESULTS: Measures of developmental, cognitive and academic function were within the normal range with each test and showed stability over time. About 33% of patients had behavior problems at each test occasion, which is higher than the 10% reported for the normal population, but the prevalence of depression fell from 23% at 12 months to 13% at 3 years. Although there were no significant differences between heart and heart-lung recipients, children with a pre-transplant diagnosis of CHD had poorer scores on cognitive and behavioral parameters than those with CM. In particular, while the prevalence of behavior problems showed a slight decrease over time in the CM group, it increased from 33% at 12 months to 75% at 3 years in the CHD group. CONCLUSIONS: A number of pediatric patients continue to have psychological difficulties 3 years after transplant. Initial diagnosis is an important factor in post-transplant psychological functioning, with a diagnosis of CHD appearing to be a risk factor for greater psychological morbidity, at least in the short and medium term. Further follow-up must address whether such differences persist in the longer term. Patients at risk for poorer psychological outcome need to be identified so that interventions can be implemented to reduce psychological morbidity.

Physical functional outcomes after cardiothoracic transplantation.

The study of patient healthcare outcomes after cardiothoracic transplantation has increased substantially over the last 2 decades. Physical function after heart, lung, and heart-lung transplantation has been studied using both subjective and objective measures. The majority of reports in the literature on physical function after cardiothoracic transplantation are descriptive and observational. The purposes of the article are to review and critique the existing literature on cardiothoracic recipients' subjective and objective physical function, including respiratory function for heart-lung and lung transplant recipients. In addition, the literature on sexual function in cardiothoracic recipients is examined, the gaps in the literature are identified, and recommendations are given for future research.

Psychological disorders and distress after adult cardiothoracic transplantation.

This review summarizes and integrates evidence concerning mental health outcomes following heart, lung, and heart-lung transplantation. Drawing on English-language case reports and empirical studies published between January 1980 and December 2004, the goals of the review were to (a) describe the prevalence and clinical characteristics of psychological disorders, as well as the level and pattern of clinically significant distress in the years posttransplant; (b) review the major risk factors for poor posttransplant psychological outcomes; (c) consider evidence suggesting that posttransplant psychological outcomes predict physical morbidity and mortality after transplant; (d) summarize findings from intervention studies designed to improve posttransplant psychological outcomes; and (e) provide patient care recommendations for the practicing clinician and recommendations for continued clinical research. Several major conclusions can be drawn from this literature. First, depressive and anxiety-related disorders and associated distress are common posttransplant. While new onsets of disorder may decline after the first year posttransplant, the development of new medical complications in the late years posttransplant may provoke renewed distress and recurrences of disorder. Second, risk factors for posttransplant psychological disorders and elevated distress include both standard risk factors observed in other populations (eg, younger age, lifetime history of psychiatric disorder) and transplant-specific factors related to physical functional impairments, social supports, and strategies for coping with health problems. Third, while little evidence has been published to date, there is some indication that posttransplant psychological outcomes can predict subsequent physical health outcomes. Fourth, extremely few intervention studies in cardiothoracic transplant recipients have been performed. The few reports indicate that multicomponent psychosocial strategies focused on risk factor reduction and enhancement of personal coping resources may lead to reductions in psychological distress. An important caveat in considering all of the evidence reviewed is that most studies focus on heart rather than lung or heart-lung recipients. Recommendations for practicing clinicians focus on assessment and treatment options, based on the evidence to date. Research recommendations focus on the need for intervention effectiveness studies.

Cognitive function in adult cardiothoracic transplant candidates and recipients.

Innovative surgical and medical techniques have prolonged the life span of cardiothoracic (CT) transplant recipients and made transplantation an option for many older patients. Cognitive function is a key determinant of the CT transplant recipient's ability to manage the complex treatment regimen and experience optimum benefit of the procedure. As the CT population ages, risk of cognitive dysfunction due to normal aging is compounded by the physical and mental changes associated with end-stage organ disease, comorbid conditions, and transplant-related complications. Cognitive abilities consist of (a) receptive functions (ability to select, acquire, classify, and integrate information); (b) memory and learning (ability to store and retrieve information); (c) thinking (ability to mentally organize and reorganize information; and (d) expressive functions (ability to communicate or act upon information). Although each of these functions represents a distinct type of behavior, they are interdependent. The purpose of this article is to (a) discuss the literature regarding cognitive function before and after adult heart, lung, and heart-lung transplantation; (b) identify methodological problems associated with the studies done to date; and (c) make recommendations for future research in this area.

Adherence to the therapeutic regimen in heart, lung, and heart-lung transplant recipients.

Optimal outcome after heart, lung, and heart-lung transplantation can only be obtained if patients are supported in adhering to a lifelong therapeutic regimen. The transplant patient's therapeutic regimen consists of a lifelong medication regimen, including immunosuppressive drugs; monitoring for signs and symptoms related to complications; avoidance of risk factors for cardiovascular disease and cancer (ie, diet and exercise prescriptions, nonsmoking); avoidance of abuse/dependence of alcohol or illegal drugs, as well as attending regular clinical checkups. Nonadherence to all aspects of this regimen is substantial. Nonadherence has been related to negative clinical outcome in view of acute rejections, graft vasculopathy, higher costs, and mortality. This review focuses on the prevalence, correlates, and consequences of nonadherence to the therapeutic regimen in heart, lung, and heart-lung transplantation. The current state of the-art on adherence-enhancing interventions is reported. Priorities for future research are outlined.

Social adaptation after cardiothoracic transplantation: a review of the literature.

From the earliest days of transplantation, research has contributed to our knowledge of the psychosocial sequelae associated with the outcomes of the procedure. The purpose of this review is to describe the social adaptation literature for heart, lung, and heart-lung recipients. Social adaptation refers to employment and performance of social roles and responsibilities. Employment research focused on vocational rehabilitation, physical health restoration, and return to work. Social roles and responsibilities research focused on social roles, family relationships, social support, and psychosocial adjustment. Predictors, interventions, and their associations with outcomes are discussed.

Functional status and quality of life in patients surviving 10 years after lung transplantation.

Although many lung allograft recipients achieve long-term survival, there is a lack of published data regarding these patients' functional status and quality of life (QoL). We evaluated all 10-year survivors at our institution and, utilizing the SF-36 questionnaire, compared their QoL to population normative and chronic illness data. Twenty-eight (29%) of 96 patients survived > or =10 years following 11 single, 6 bilateral and 11 heart-lung procedures. At the most recent evaluation, median FEV(1) in single and double lung recipients was predicted to be 54% and 74%, respectively. Five (18%) patients had BOS score 0, 13 (46%) BOS 1, 5 (18%) BOS 2 and 5 (18%) BOS 3 and median time to BOS was 7 years. Four (14%) patients required renal replacement therapy. Three patients (11%) developed symptomatic osteoporosis, 2 (7%) post-transplant lymphoma and 1 (4%) an ischaemic stroke. Scores for physical function, role-physical/emotional and general health, but not mental health and bodily pain, were significantly lower compared to normative and chronic illness data. Energy and social-function scores were significantly lower than normative data alone. Long-term survival after lung transplantation is characterized by an absence or delayed development of BOS, low iatrogenic morbidity and preserved mental, but reduced physical health status.

Beyond the first year after pediatric heart or heart-lung transplantation: Changes in cognitive function and behaviour.

With the increasing use and improved survival rates of heart and lung transplantation as treatments for children with end-stage heart or lung disease, attention is focusing on the longer term psychological implications of these procedures. This paper focuses on the changes in cognitive development and behaviour in a group of 47 children who were seen 12 months and 2 yr after transplantation. There were 24 boys and 23 girls, mean age at transplantation was 8.3 yr (s.d. 5.3 yr), with a range of 0.3-15.1 yr. Assessments were made of developmental level, cognitive ability and problem behaviours, using previously validated measures, and comparisons were made with physically healthy children. For children under three and a half years of age there was a decrease over time in scores on all developmental parameters, with the change reaching significance on the scale assessing eye-hand coordination and on the overall IQ. Whilst all scores were within the normal range, they were at a significantly lower level than those of the healthy children. In contrast, there were no changes over time on any measures of cognitive or academic ability for older children, with correlations between 12 month and 2 yr scores being highly significant. The rate of behaviour problems at home at 12 months was 22%, compared with 34% at 2 yr post-transplant, which was higher than that found in the healthy children. Conversely, there was a drop in the prevalence of behaviour problems at school from 23% at 12 months to 9% at 2 yr. It is concluded that a significant minority of children and adolescents experience psychological difficulties 2 yr after transplant, with particular areas of concern focusing on development in the younger children and the occurrence of behaviour problems at home across the age-range.

Depression in pediatric patients before and 1 year after heart or heart-lung transplantation.

BACKGROUND: Although depression is a significant psychiatric condition of childhood and adolescence and those with a chronic medical problem are at increased risk for developing depression, the prevalence of depression in children and adolescents undergoing heart and heart-lung transplantation has not been addressed. However, the role of psychosocial factors, such as mood state, in determining outcome is being increasingly acknowledged. METHODS: The Mood and Feelings Questionnaire, a rating scale of depressive symptoms, was administered to 58 children before transplantation and to 46 children after transplantation, with 24 completing both assessments. To compare children's and parents' ratings, both child and parent versions, with corresponding items, were utilized. RESULTS: Pre-transplant, the mean score on the child measure was significantly higher (p < 0.001) than that on the parent measure, with 24% and 21% on the child and parent measures, respectively, obtaining scores indicative of depression. Parents of children with acquired heart disease rated their children as having significantly more depressive symptoms than parents of children with congenital heart disease or cystic fibrosis. After transplantation, there was a reduction in mean scores on both the child and parent questionnaires and the pre-transplant differences between the different diagnostic groups were no longer apparent. Over time the numbers obtaining scores indicative of depression decreased by approximately 50%. CONCLUSIONS: Transplantation is associated with a reduction in the prevalence of depressive symptomatology. The role of original diagnosis in the manifestation of depression both before and after transplantation requires further investigation.

Psychosocial vulnerability, physical symptoms and physical impairment after lung and heart-lung transplantation.

BACKGROUND: Many lung and heart-lung transplant recipients experience distressing physical symptoms and elevated physical impairment levels. Although post-transplant complications and secondary illnesses may largely account for these health limitations, patients' psychosocial well-being may influence them as well. We examined the contribution of psychosocial variables to patients' experience of physical symptoms and physical impairment. METHODS: The study consisted of a cross-sectional sample of 50 patients (36 lung, 14 heart-lung) at between 2 and 17 months post-transplant. They were interviewed to assess physical symptoms, current physical impairment and psychosocial well-being in the areas of mental health, sense of mastery and coping. Medical record reviews established the presence of medical complications and secondary illnesses concurrent with the interviews. Descriptive analyses examined the range of symptoms and levels of physical impairment experienced. Bivariate analyses and multivariate linear regression examined relationships between key variables. RESULTS: Average number of physical symptoms and level of physical impairment met or exceeded levels reported in other transplant samples. Elevated depressive and anxiety symptoms, a low sense of mastery, and the presence of concurrent medical complications were each associated with increased number of physical symptoms and physical impairment level. When the impact of concurrent medical complications was controlled, recipients with elevated psychologic distress remained significantly more likely to report more physical symptoms and higher physical impairment levels. CONCLUSIONS: Patients' physical health status may be influenced by many factors. To the extent that psychologic distress increases the likelihood of perceived physical limitations, timely identification and treatment of distress may help to maximize quality of life after lung and heart-lung transplantation.

[The influence of anxiety, depression and post traumatic stress disorder on quality of life after thoracic organ transplantation]. / Psychosoziale Belastung und Lebensqualität bei Patienten nach Herz- oder Lungentransplantation.

OBJECTIVES: This study examines stress factors, resources of coping, psychopathological symptoms and their influence on health-related quality of life (QoL) in patients after heart or lung transplantation. METHODS: 82 Patients were examined with the questionnaires SF-36 (QoL), HADS-D (anxiety and depression), IES-R and PTSS-10 (post traumatic stress disorder, PTSD) 32.3 (4-86) months after transplantation. Stress factors, resources and diagnostic criteria for PTSD were investigated by structured interview. RESULTS: In the entire sample, anxiety, depression and QoL were in the range of normal population. A subgroup of 13 patients with a PTSD diagnose had significantly reduced QoL. Anxiety and intrusion explained the 42 % variance of psychosocial score of QOL. CONCLUSIONS: There was a lower influence of depression on the medical score of QoL. Psychological symptoms such as anxiety, depression and PTSD significantly influence QoL after heart or lung transplantation. Patients with a PTSD diagnose had poor QoL. Screening for PTSD should be part of routine evaluation after organ transplantation.

Attitudes of potential candidates for heart and heart-lung transplantation to xenotransplantation.

CONTEXT AND OBJECTIVES: Whether the fact that a transplanted organ is non-human would affect acceptance levels among potential recipients of heart and heart-lung xenografts has not been determined. Studies in renal patients have produced contradictory results. Furthermore, no previous studies have examined the attitudes toward xenotransplantation among the chief caregivers of potential transplant recipients. PARTICIPANTS AND MEASURES: Fifty-nine patients and 54 caregivers responded to a questionnaire that requested their views on xenotransplantation, the source and level of their knowledge about xenotransplantation, and the perceived costs and benefits of this intervention. Patients' and caregivers' attitudes to animal experimentation and killing animals for human benefit were also assessed by using a specifically designed attitude questionnaire. RESULTS: Fifty-six percent of patients and 48% of caregivers were unsure about xenotransplantation. Seventy-nine percent of patients and 85% of caregivers indicated that they had received little or no information about xenotransplantation, and what information they had received was from nonmedical sources. Availability of organs was the main perceived benefit (36% of patients and 40% of caregivers) and ethical and moral issues were the main perceived cost (20% of patients and 25% of caregivers). Overall patients and caregivers were in agreement with animal experimentation and killing animals for human benefit. CONCLUSIONS: Potential heart and heart-lung recipients and their caregivers have limited information about xenotransplantation and are currently unsure about the acceptability of this procedure. Although this uncertainty may be due to their lack of information about this intervention, it may also reflect concerns about the morality of breeding animals solely to provide organs for transplantation.